KSJ Tracker
March 15, 2013

Baby, adults living without AIDS drugs: Does this justify use of the c-word (cure)?

Reporters who cover science and medicine often make the mistake, early in their careers, of reporting that somebody who has responded to a treatment has been "cured," or that some medical advance or other is a "breakthrough." After we've made a mistake such as that, or more than one, we generally learn that many, many things called "cures" or "breakthroughs" are anything but.

Medicine generally advances in incremental steps, not breakthroughs. And there are many treatments that improve the lives of patients but don't wipe out illness in the way that we might call a cure.

So it's notable that scientists have used the word "cure" twice in recent weeks in regard to treatments for AIDS, something we've generally been told is likely to be, at best, a chronic, manageable disease--but not one that can be cured. Many people with AIDS are now living reasonably healthy lives thanks to a cocktail of helpful drugs, but we don't say they are cured.

So what has happened here? Do the new reports justify the use of the c-word by researchers who might otherwise be warning reporters to be cautious in what they write?

The word "cure" appeared in the news about 10 days ago, when doctors announced at a medical conference in Atlanta that they had cured a baby born in rural Mississippi by treating it aggressively with antiretroviral drugs beginning about a day after it was born. “It’s proof of principle that we can cure HIV infection if we can replicate this case,” Dr. Deborah Persaud, an associate professor at the Johns Hopkins Children’s Center and the lead author of the report on the baby, told Andrew Pollack and Donald G. McNeil Jr. at The New York Times.

The Times quoted one critic who said he did not know of definitive evidence that showed the baby was infected. (It's rather easier to cure a baby that isn't infected than one that is.) Persaud said multiple signs indicated that the baby was indeed infected. She called the baby's outcome a "functional cure." The baby has been off of drugs for a year with no sign of "functioning virus." That comment suggested to me that the researchers are already pulling back on their claim. Whatever we might deem a "cure" to be, a "functional cure" is certainly something less than that. And "no sign of functioning virus" is less than "no sign of virus."

Tabitha M. Powledge of On Science Blogs surveyed bloggers to see what they made of this. The doctor and medical writer Atul Gawande of The New Yorker tweeted that the development was "huge, stunning, world changing." Others mentioned by Powledge were more cautious, arguing that it was unclear what this meant for others infected with HIV and that this does not mean it's safe to stop taking antiretroviral drugs.

Laura Newman wrote at DoubleXScience that it's already the case that mothers infected with HIV can, with good care, safely deliver a baby free of HIV infection. Rather than trying to provide a "functional cure" for infected infants, doctors would do far better to prevent such infections, Newman writes. Why, she asks, did the mother of the "cured" infant not get proper prenatal care?

Ron Winslow at The Wall Street Journaldid a helpful Q&A exploring the implications of the baby's "cure." The baby, as multiple stories pointed out, was the second person to be "cured" of AIDS; the first was a man named Timothy Brown, known as the Berlin patient, who was cured when he received a bone-marrow transplant for leukemia.

Winslow makes the important point that this was not a careful experiment; the mother took the baby off therapy, "something a doctor would almost never do," Winslow writes. Winslow's reporting leads him to suggest that the experience with the baby provides hope for children in the developing world.

Before we get more deeply into the baby's story, however, we must take a look at the most recent story: French researchers reported Friday that they had found 14 people whose immune systems seem to be controlling HIV without medication. Here we get a new kind of qualified cure. As Richard Knoxwrites on NPR's shots blog, the researchers are "not explicitly claiming these patients are cured, but they are calling them 'post-treatment HIV controllers,' in 'long-term remission.'"

What, exactly, are the implications of that? Knox says this is the kind of thing that doctors call a functional cure, or "control of virus replication after patients stop taking antiretroviral medications. That's different from a 'sterilizing cure,' which is total elimination of all traces of HIV from the body."

But Michael Saag, MD, of the University of Alabama Birmingham, told Michael Smithof MedPage Today that he does not recommend stopping HIV therapy. For most people, "stopping therapy leads to sharp and dangerous increases in HIV replication," he said.

Andy Coghlan of New Scientist notes, as did others, that even in the French study, most patients who stopped therapy relapsed. The researchers found 70 people with HIV who had been treated and then had stopped taking drugs. Only 14 did not relapse, the 14 highlighted in the study. Those odds are not good. If my math is right, that means that 20 percent of the subjects were able to control their HIV infections; 80 percent were not.

Monte Morin of the Los Angeles Times described the 14 patients who were "functionally cured," but doesn't mention the 80 percent who were not. Pollack and McNeil in the New York Times properly note that only a small percentage of people who start treatment early can ultimately control the virus without treatment. John Timmer at ars technicadoes the same, as does George Dvorskyat io9.

The larger point is that the proper approach with stories such as these is to be very careful not to overstate the findings or the implications. Be cautious now, and be excited to write the follow-up in a year or two reporting that these are cures and do have implications for others, if that turns out to be the case.

The alternative is to get excited about "cures" now and likely be forced to write the follow-up that says, no, we were wrong to talk about cures; this just didn't work out.